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Week Ending July 11, 2008

H.CON.RES.299 Supporting the goals and ideals of National Cystic Fibrosis Awareness Month.

Recognizing cystic fibrosis as one of the most common genetic diseases for which there is no known cure, the preamble notes that of the 30,000 victims, half are children. 10 million carry the disease without symptoms.

More resolution below….

Sponsor:  Rep. Ed Markey (D-MA-7^th)

Vote: Passed House by voice vote July 15, 2008

Cost to the taxpayers: No discernible cost

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Whereas cystic fibrosis is one of the most common life-threatening genetic diseases in the United States and one for which there is no known cure;

Whereas the average life expectancy of an individual with cystic fibrosis is 37 years--an improvement relative to the 1960s when children with cystic fibrosis did not live long enough to attend elementary school, but still unacceptably short;

Whereas approximately 30,000 people in the United States have cystic fibrosis, more than half of them children;

Whereas one of every 3,500 babies born in the United States is born with cystic fibrosis;

Whereas more than 10,000,000 Americans are unknowing, symptom-free carriers of the cystic fibrosis gene;

Whereas the Centers for Disease Control and Prevention recommends that all States consider newborn screening for cystic fibrosis;

Whereas the Cystic Fibrosis Foundation urges all States to implement newborn screening for cystic fibrosis to facilitate early diagnosis and treatment which improves health and life expectancy;

Whereas prompt, aggressive treatment of the symptoms of cystic fibrosis can extend the lives of people who have the disease;

Whereas recent advances in cystic fibrosis research have produced promising leads in gene, protein, and drug therapies beneficial to people who have the disease;

Whereas innovative research is progressing faster and is being conducted more aggressively than ever before, due, in part, to the Cystic Fibrosis Foundation's establishment of a model clinical trials network;

Whereas although the Cystic Fibrosis Foundation continues to fund a research pipeline for more than 30 potential therapies and funds a nationwide network of care centers that extend the length and quality of life for people with cystic fibrosis, lives continue to be lost to this disease every day;

Whereas education of the public about cystic fibrosis, including the symptoms of the disease, increases knowledge and understanding of cystic fibrosis and promotes early diagnosis; and

Whereas the Cystic Fibrosis Foundation will conduct activities to honor National Cystic Fibrosis Awareness Month in May, 2008: Now, therefore, be it

Resolved by the House of Representatives (the Senate concurring), That the Congress--

(1) honors the goals and ideals of National Cystic Fibrosis Awareness Month;

(2) promotes further public awareness and understanding of cystic fibrosis;

(3) advocates for increased support for people with cystic fibrosis and their families;

(4) encourages early diagnosis and access to high-quality care for people with cystic fibrosis to improve the quality of their lives; and

(5) supports research to find a cure for cystic fibrosis by fostering an enhanced research program through a strong Federal commitment and expanded public-private partnerships.

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